Festive season is coming, and many of you would have received an email to get Perfume . Nope it is not spam (for those who asked), and it is actually an initiative by Josse. The funds will help tremendously for Cynthia and family, be it living, or searching for other options for Charmaine.

Do not forget to pray for her and the family for strength. Of course, for Jase jase too =)

Thank you Ling lee and friends,Thank you Huiling and team from iDAYour continual efforts in raising funds for the family has minus a few bits of stress from Cyn's daily worries.

Last December was when Godma Jolene and myself, spent our Xmas with them.This year, I am all stuck in Singapore.

Friday, November 26, 2010

I am finding it hard to write... I am finding it tough to control the tears... I don't understand what I'm feeling anymore...

What do I say to you? What do I even say to myself... I no longer know what is going on... What to think? How to decide? Who can I trust?

All I know is that I'm going through the motion every minute of my life. I wake up; get Jase ready for school; feed Char; go to hospital; pick Jase from school; feed them and than sleep to another day of routine. Like a robot, void of love, faith, hope and happiness.

I remember how to laugh and I still can smile but my heart feels so numb. Some hours are easier to pass, some days feel more grim than others... In one week, the number of bad news we hear in the house is enough to make me want to wither like a flower... Char's progression from nothing to something so large despite radiation and chemotherapy just makes me want to lay somewhere and turn myself into dust... Another 2 yr old girl who just recently completed chemotherapy and is about to get back to her normal life just suddenly lost conscious on the same day we hear our horrible news. They found a tumor in her head. That night, you see tearful faces of moms vs the laughters of the little ones unaware of the harsh reality their fate has brought them...

I still dont know what to write... everything is a jumbled mess in my head, my heart and my mind. Its as though that staying away from here, from updating our Facebook status 'helps' me in escaping all these. Maybe subconsciously my mind doesnt want to have anything to do with neuroblastoma or whatever cancer there is. I am drained. I am worn out. I want to hate something/someone. This fight feels so unfair. Why couldnt I throw my punches directly at it? I am fighting blind all the time. My enemy is out of sight, lurking, hiding and probably having a good time seeing my defeated, dejected self now. And this coward is using the most sickening underhand method towards me!!! Fight me openly!!! DONT TORTURE MY BABY LIKE THIS!

To wake up one day and find that her leg has grown more bow-shaped than the previous day is like having a knife stab at my heart a thousand times but at least when its a knife wound, at some point, I will catch my last breathe and not feel anything. But to force me to watch daily and fear daily, having absolutely no idea what is causing it and getting no help, no answers from the doctors is driving me nuts. I have no idea how is it other parents in the house can put on such a brave front, always striving to find the good in spite of it all. Even thankful for being able to spend Thanksgiving together, in spite of it all.

I cant. I dont want. I want to cry, to curse at every darn cancer I know of. I dont even pray the past week. What has all my prayers brought? Nothing. Absolutely nothing but one bad news after another. I lost my direction totally. Whats the point really. Its like I am just trying so hard to act like there is something I can do and that is to pray. I have nothing to be thankful for, at least nothing that I need. Yes, there is always the bright side to everything.

But today, I am done with searching for that bright spot in my life. I want to let my myself sink into my abyss of darkness, free falling, nothing holding me or pulling me back. Maybe, just maybe, only than will I reach my lowest point, hit the sea bed or touch the core of the earth or something and that there is simply honestly no other way but... up. Even this whole sentence feels like crap to me, if I may add. Like another myth, just to provide hope to the hopeless ones like yours truly.

I mean we are all programmed this way, arent we? To cheer the hopeless, to tell them not to give up, to give them something to hold on to even if its a myth... And this is what life is all about, isnt it? We all will end up 6 feet down, at some point. If everyone harps on our death, we might as well have given up on living from the day we were given life. And than, whats the point of living anyway.

Am I making sense here? I bet not. I know I am pretty much acting like a brat now, refusing to heed any advice, rejecting any support, and is all bent on living in my darkness. I dont know why am I acting this way. Truth is: THIS IS TOUGH. I am not always the positive, strong, courageous, and amazing mother. I have my weaknesses, my faults, my negativity, my fears and my desperation. And today feels like the moment of darkness has engulfed me entirely.

I dont want to fight this moment. Do you think if I stopped, call for a truce? Or take 5? and the battle can be paused momentarily? Probably not right? The enemy might be cunning and make use of my moment of weakness to finish me up once and for all? But truth is, even though I want to fight on, I'm badly wounded. So badly wounded I can barely stand up on my own. Whats more to protect my 2 little ones. Have you felt this way like I do? Like everything just seem to be wrong. Nothing is okay.

Tomorrow, Charmaine will be having a minor operation for the surgeon to put a temp into her body. They will check her counts and if her CD 4 is zero, we will have to head back to Urgent Care at 9pm to have an injection to boost her CD 4 counts in order for us to harvest her stem cells on Wednesday. I was told that the injection would not have any side effects but coincidentally met a parent here whose daughter got the same injection a couple of months back and suffered from hallucinations for over a week. I was shocked when I heard that. But its not like its anything new really. I mean I have already learned that my path will be strewn with obstacles big and small and it was never meant to be easy. To expect good news is like someone trying to win the lottery or jackpot. But yet everything when I hear another shocker, it still has that effect of freaking me out like the first time, and always never fail to upset me. One will never build an immunity to news like that, it seems.

And depending on the stem cells harvested on Wednesday, we may have to harvest on Thursday as well. And the plan is to start her on the new trial as soon as we manage to harvest enough stem cells from her.

So this is the part where I strive to be like everyone else and repeat the mantra:

IN SPITE OF IT ALL...

Charmaine is still walking/limping/running or whatever you call it, with her rather bow-shaped left leg, not complaining of pain (THANK GOD!). You would never be able to tell that we just received news of bad scan results a week ago and that she has progressed much more. She is still the same girl, smiling, playing, totally oblivious to what's in store this week. And it breaks my heart. I cannot even bear to begin to explain to her what to expect for this week. How is it possible? There must be a huge mistake somewhere. She absolutely do not fit the bill. Am I in denial? I dont know. All I know is that the docs themselves are having a hard time picture her physical reality with her scan reality. NOTHING fits except for that massive black spot on that stupid scan.

I am tormented daily on the decision. Under common circumstances, the child will be put through high dose chemo immediately almost without questioning. But yet, they have proposed a light dose with a new antibody. It definitely wasnt the norm. And I am struggling to convince myself which is better. I dont want to ruin her quality of life with a high dose but can I risk delaying the high dose for 2months while we do a light dose? What happens if she progressed even further? I am SOOOOOOOOOOOOOOOOOOOOO TORN.

But yet, we know that Charmaine's cancer is somewhat resistant to chemo and hence I do not feel safe just doing chemo alone, without something else. Hence, while high dose is norm, I dont know if her cancer cells will be killed or not. I mean those darn cells can even survive all the radiation and continue to multiply!?!?!?!?! ARGH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

On top of all these, I still have to fret about finances and all. Trying to set up new appointments with other hospitals should we run out of options in NY...

I just want to stop, wave my white flag and call for a truce. I miss home. I just want to go back home, lay on the same bed, be that 16 year old girl who can just hide in the room, from the rest of world, have a good cry and not have to carry any responsibilities on my shoulder...

My faith is being rocked big time but if you have faith in me, please help me pray that the operation will go smoothly tomorrow and that we will be able to harvest alot more stem cells than what is required without that hallucinating injection but just GCSF alone. And that we have finally found the right treatment for Charmaine. I NEED THAT MIRACLE NOW.

Sunday, November 14, 2010

Its the time again...

I am pretending to live life as 'normally' as possible while making sure that I dont get ahead of myself and start taking 2 steps more than what is allowed. I keep breathing and I keep chanting: "one step at a time, one step at a time".

Of course, there is always something new in our routine. Never a dull day really. Last Monday, Charmaine was diagnosed with an ear infection so we are on Antibiotics to treat that infection. On a thankful note, its something treatable!

And since our first chemo in New York, which was more than a month ago, Charmaine has not complained of her right knee pain. HOWEVER, always something new right? A few days ago on Thursday evening, Charmaine suddenly started complaining of pain in her RIGHT KNEE again. DARN IT. That just about killed me there and than.

Left leg pain, I can comfort myself and say "Muscle Spasm!" But why the damn right leg pain re-surface just a few days before scans??? A hundred possibilities flashed in my mind and I simply couldnt stop freaking myself out. I mean, we RADIATED that right femur, not once but TWICE!!! Can you imagine how much damage have I caused to her bone, nerves and muscle and cells and how could the darn cancer cells not be killed? They should have been totally wiped out clean!!! I know I should keep my mind positive and believe me, I am trying ALL THE TIME. Its just so hard! Every complaint of pain is soooooo scary.

And than amidst all the insanity, I told myself, "well, at least its the same area!" Seriously, I feel sick to even think that way; that its good the pain is in the same area. But ya... that was how I tried to calm my nerves. :-(

PLEASE SAY MORE PRAYERS FOR CHARMAINE this coming week. Please pray that all her scans come back clean and good and that we do NOT need to head down the otherwise unimaginable tough road. Please pray that all our scans will go through smoothly and that we can quality for some good trial here in NYC so that we dont have to return to Singapore for high dose chemo.

My mind is mostly blank, so please pardon me if I am incoherent. I am so so so worried that we have to scramble back asap for high dose chemo should the results come out differently from what we pray for. I have a very unsettling mind and a heart that's pumping at a heart-attack rate (I suspect!). I dont know what kind of turn our lives is going to take in a few days, a mere 48 hours from now and it scares the hell out of me. :-(

Finally, He passes a name to an angel and says, "Give her a child with cancer." The angel is curious. "Why this one God? She's so happy."

"Exactly" smiles God, "Could I give a child with cancer a mother who does not know laughter? That would be cruel."

"But, does she have patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she will handle it."

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has it's own world. She has to make it live in her world and that's not going to be easy."

"But, Lord, I don't think she believes in you." No matter, I can fix that. This one is perfect. She has just enough selfishness." The angel gasps -"Selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take anything her child does for granted. She will never consider a single step ordinary. I will permit her to see clearly the things I see...ignorance, cruelty, prejudice...and allow her to rise above them." She will never be alone. I will be at her side every minute and every day of her life, because she is doing My work as surely as if she is here by My side."

"And what about her patron Saint?" asks the angel. His pen poised in mid-air. God smiles, "A mirror will suffice."

So much has happened and in short, we did an emergent X-ray on Monday on her left shin and thankfully, the result was negative. Doctors at MSKCC decided to continue to observe and repeat the scans in mid nov.

But I was still really worried and concern, hence I found a private Orthopedic Surgeon and brought Charmaine to him the next day. He said it was not within his expertise to comment on the cancer, however as far as he could see, Charmaine is having weakened muscles at various parts of her limbs which has caused her to be walking with bad postures, and you know, basically, one thing just leads to another. And the fact that her tiny body has gone through so much toxic treatments, radiation and all the pain, swelling just adds up to make it worse. Hence, Physiotherapy was recommended. I brought her immediately to the Physiotherapist after our session with the Ortho Surgeon on Tuesday. And based on her observation, she feels that on top of her limb muscles being weak, her spine seems to be hyperextended which in turn caused her pelvic to be slanted to a side and hence all the lower limb bad positioning and pain and muscle spasm... And on top of that, she does seem to be developing bow-leg on her left, and another 'big word' type of leg on her right. Basically, its one curved in and the other curved out...

Oh god, it is like an never-ending story, with never-ending twists and turns and never-ending challenges. BREATHEEEEEEEEEEEEEEEEEEE!

Our last 4 days has been packed with doctors' appointments and PT sessions, one after another everyday. It does seem like she is walking a little better... so I am praying very hard that ITS ALL only the side effects of all the toxic treatments and RT and a long road ahead to try and strengthen up whatever needed work.

Our future is still very much one minute, one hour and one day at a time. Nothing more. Because every time I attempt to push this rule a little bit further by foreseeing 2 days at a time, I am always jolted back by a rude awakening only to realise that I have fallen 3 steps behind.

Charmaine has been neutropenic officially since Monday and has been getting her daily painful GCSF shots. To say that she amazes me is a pure understatement. Her courage is something that would make a normal adult like me totally insignificant.

Try picturing this - Char knows how painful the shots are and she knows that she has to be injected daily until her immnuity comes back up to the minimum 1. She does not hide her fear and pain; she screams and cries out so loud that our neighbours can all hear her. Yet, she is the one who will tell me when she is ready, "Okay mommy, I think its time now, I am ready." Everyday without fail. We did this for 7 days last month. She faces her fear and her pain on a daily basis with such gutsy, never back away from it, never move an inch. I have no idea how she does it but she just do.

I am so proud to be the one she calls mother. Its about time I re-focus on learning from Charmaine her strength, her courage and her love for life. This past year has been so painful and so tough that I have entirely forgotten about what this journey is all about. Not about the pain, not about the suffering and not about all the tears shed. More than anything, its all about us learning from Charmaine and her little friends how we should always see the light, the hope, the happiness, the strength and all the love. And its about me growing up to be a better person, to not take things for granted and to treasure 'the present'.

Therefore, as tough as the past few days had been, and as heartbroken as I am today, (just learned that Elizabeth Westberry, our 3F8 roommate and close friend has passed this morning, forever 8), this shall not be a grim and teary entry.

Thanks to a mother who posted the story on her blog, I just remember that I was once known as always overflowing with abundant happiness and laughters. But I have neither played, laughed or smiled heartily in the past few months and I feel horrible that both the kids had to endure a grumpy, crybaby for so long.

I love you Charmaine and I love you Jase. Mommy promise to wake up with a big smile on my face tomorrow no matter WHAT!